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Researchers launch registry to track rare Lipin-1 deficiency

NCT ID NCT05564520

First seen Apr 01, 2026 · Last updated Jun 19, 2026 · Updated 10 times

Summary

This study is a registry that collects information on people with Lipin-1 deficiency, a rare genetic condition. It aims to track how patients are doing over time, including survival and heart function. No new treatment is being tested; instead, the goal is to learn more about the disease and compare current treatments.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Locations

  • Necker - Enfants Malades Hospital

    Paris, 75015, France

Conditions

The condition(s) this trial relates to.

Rhabdomyolysis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.